Weak stomach digestion after undiagnosed celiacs

[RobHicks]

Wanted to see if this was true for anyone else. My celiacs was undiagnosed for years and I think my stomachs overall function has been permanently damaged. I have to stay upright after eating, cannot lie down sit down for too long or swim or I will end up with a stomach full of half digested food and acid that i throw up later. I also can not eat anything greasy or fatty without severe reflux and will probably throw it up later too. Is this anyone else’s experience too?  Even after being gluten free for years your stomach is weak and needs gravity to properly digest? 

[trents]

Welcome to the forum, @RobHicks!

Actually, celiac disease damages the upper part of the small bowel rather than the stomach. It's the part of the intestine right below the stomach.

Since being diagnosed, have you had a follow-up endoscopy with biopsy to check to see if there is good healing in the small bowel lining since beginning the gluten free journey?

You may have something else going on besides celiac disease. From what you describe, it sounds like your stomach is not emptying properly. Have you presented this problem to a GI doc?

[RobHicks]

Multiple times. Have had several emptying studies and endos that come back normal.

[Scott Adams]

It’s not uncommon for people with celiac disease, especially those undiagnosed for a long time, to experience lasting digestive issues even after going gluten-free. The damage caused by years of inflammation in the small intestine can sometimes lead to other conditions like delayed gastric emptying (gastroparesis), acid reflux, or food intolerances. Staying upright after eating can help with digestion, particularly if reflux is an issue, as lying down can exacerbate symptoms. Greasy or fatty foods can be harder to digest, especially if your digestive system is still healing or if you’ve developed sensitivities. It’s important to discuss these ongoing symptoms with a gastroenterologist, as there might be additional treatments or dietary adjustments that could help. You’re definitely not alone in feeling like your stomach needs extra care, and hearing others’ experiences can be validating. One thing you should do is look at your diet again, and be sure that it is 100% gluten-free.

Choline is a supplement that may help you with your symptoms, so consider this as well.

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[Celiacandme]

My gastroenterologist had me incorporate VSL#3 to help with similar issues. It can take a long time to heal. I also found adding kiwi to my diet was soothing to my stomach. For me, it was important to avoid other inflammatory foods. Dairy, corn, etc, were aggravating to my stomach. Bone broth has been another life saver for me over the years. I do know I continue to be sensitive. If I were to have dairy for two days in a row it would be like adding a log to a fire to my sensitive system. I do also have issues with acid reflux though. (Barrett's esophagus) I also stay up after eating. They say to for 3 hours but even 2 is helpful. Keep us posted on how you are. Hope you get some relief soon.

[RobHicks]

Thank you. Yeah I avoid lots of foods just wondering if my situation is common. GI doctor I’m seeing now doesn’t think my present situation is related to the celiacs whereas I do. 

[Scott Adams]

How long ago were you diagnosed? There are many symptoms and issues for those who are newly diagnosed, and recovery can take a while.

This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet:

• Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet

However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people.

According to this study:

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After an average of 11 months on a gluten-free diet, 81% of patients with celiac disease and positive tissue transglutaminase IgA (tTG-IgA) at baseline will revert to negative tTG-IgA (SOR: C, disease-oriented evidence from retrospective cohort study). The intestinal mucosa of adult patients with celiac disease will return to normal after following a gluten-free diet for 16 to 24 months in only 8% to 18%. However, in children after 2 years, 74% will have a return to normal mucosa (SOR: C, diseaseoriented evidence from longitudinal studies).

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This article explores other causes of flattened villi: